Phyllis Sloyer

Partners in care: together for kids: Florida's model of pediatric palliative care.

BACKGROUND Many children with life-limiting illnesses in the United States could benefit from pediatric palliative care. However, national, state, and local barriers exist that hinder provision. One national barrier is the Medicare hospice reimbursement regulation that limits the provision of government subsidized hospice care to the final 6 months of life. In response to the critical need to provide palliative care earlier in childrens illnesses, Florida became the first state to develop and implement an innovative model of care that provides services from the point of diagnosis onward, thereby waiving the 6-month reimbursement rule. In July 2005, the Partners in Care: Together for Kids program began. The program relies on partnerships between state-employed care coordinators who identify the children for possible enrollment and hospice staff who provide home and community-based services. OBJECTIVE Our objective was to describe Floridas experiences in designing, implementing, and operating the program. DESIGN Surveys were conducted with parents, hospices, and state agencies. Enrollment trends were identified using administrative data. RESULTS As of January 2008, 468 children have been enrolled in the program. Approximately 85% of parents report they are satisfied with the program and 95% of parents would recommend the program. CONCLUSION Floridas program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Floridas experiences will help guide other states and health plans that desire to implement a similar model of care.

Information seeking behaviors of parents whose children have life‐threatening illnesses

For children with life‐threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e‐health literacy of Internet‐users.

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their childrens illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs. OBJECTIVE To determine how families are impacted and what factors are associated with greater impact. DESIGN 2008 cross-sectional telephone survey. SETTING Florida. PATIENTS Eighty-five parents whose children had life-limiting illnesses and were enrolled in Floridas publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE The Impact on Family (IOF) Scale. RESULTS The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their childrens illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family. CONCLUSION Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family members needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their childrens pediatric palliative care programs.

Health Status and Health-Related Quality of Life in a Pediatric Palliative Care Program

BACKGROUND Children with life-threatening illnesses have unique physical and psychosocial needs that pediatric palliative care programs can address. Integrated programs strive to address these needs from the point of diagnosis through death, if needed, at the same time that curative care is provided. To better understand the variation in these needs, we assessed the health status and health-related quality of life (HRQOL) of children enrolled in an integrated pediatric palliative care program. METHODS A telephone survey was conducted with 98 parents whose children were enrolled in an integrated pediatric palliative care program in Florida. The Health Utilities Index (HUI) system was used to assess health status and HRQOL. RESULTS HUI2 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to self-care, mobility, and sensation, and the least impairment with emotion. HUI3 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to ambulation and cognition and the least impairment with hearing and emotional functioning. Mean overall HUI2 and HUI3 utility scores are 0.37 and 0.15, respectively. CONCLUSION Children with life-threatening illnesses in our sample had a high level of morbidity compared with those found in other HUI studies of children with acute or chronic health conditions. Not only do our results highlight severely impaired HRQOL, they also demonstrate the wide variety of health states and needs for children in integrated palliative care programs. This information can help develop strategies to encourage more providers to participate in integrated pediatric palliative care programs.

Music Therapy in an Integrated Pediatric Palliative Care Program

National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida’s Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents’ experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P < .05) versus parents whose children did not use music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.

Caring for Children with Life-Threatening Illnesses: Impact on White, African American, and Latino Families

We describe the racial and ethnic variation in family impact resulting from caring for a child with a life-threatening illness. Parents of children aged 2-21 years diagnosed with a potentially life-threatening illness and enrolled in Floridas Medicaid and Childrens Medical Services Network programs were surveyed. Two hundred sixty-six telephone surveys were conducted in English and Spanish between November 2007 and April 2008. In adjusted models, compared with Whites, Latinos reported that their childs illness resulted in a greater negative impact on the family. Continued study of this group of parents is critical to developing culturally appropriate interventions to reduce strain and burden and improve the quality of life for families.

Assessing non-response bias in pediatric palliative care research

National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida’s publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which ‘non-response’ can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.

Age Group Differences in Healthcare Access for People With Disabilities: Are Young Adults at Increased Risk?

PURPOSE The purpose of this study was to quantify and describe the population of young adults with disability in Florida and to assess correlates of healthcare access in this population in contrast with adults belonging to middle and older age groups. METHODS This study analyzed data of 36,704 respondents obtained from the 2007 Florida Behavioral Risk Factor Surveillance System. A test for homogeneity of the risk difference across the three age groups was conducted using inverse weighting to adjust for confounding and selection bias. RESULTS The adjusted model for risk difference of not being able to see a doctor in the past 12 months because of cost was significantly heterogeneous across age groups (χ(2)(2df)F value = 12.40, p < .01). The risk difference between population of young adults with disability and their age peers decreased significantly across the groups. The risk difference was 15.5% for those aged 18-29, 11.9% for those aged 30-64, and 2.1% for those aged ≥65. CONCLUSIONS This article quantifies the differences in risk and access to health care between young adults with and without disability, using population-based data. It provides indirect evidence of the widely held belief that there is a problem in healthcare transition in the United States warranting continued investigation and intervention.

Effect of a Pediatric Palliative Care Program on Nurses' Referral Preferences

PURPOSE Florida was the first state to develop and implement a publicly funded pediatric palliative care program, which provides supportive care services to children and families from the point of diagnosis onward. Nurses employed by the Florida Department of Health, Childrens Medical Services Network (CMSN) play an important role in this program as they are charged with identifying children with life-limiting illnesses in their caseloads for referral to the program. This study aims to estimate the differtences in referral preferences of nurses who work in Partners in Care: Together for Kids (PIC:TFK) program areas versus nurses who work in non-PIC:TFK areas. METHODS Mail and Web-based surveys were conducted with 279 nurses, 141 of whom work in a PIC:TFK site and 138 did not. RESULTS Results of the multivariate analyses suggest that few significant differences exist in the nurses preferences to refer children to pediatric palliative care; however, there were significant differences in the preferred timing of referral. Nurses who work in an PIC:TFK area were 3.7 to 10.4 times as likely as nurses who do not work in a PIC:TFK area to refer children prior to the end of life. CONCLUSION Our study provides evidence that nurses who have experience with a pediatric palliative care program are more likely to refer children to programs before the end of life. While our study results are encouraging, they also suggest that as the PIC:TFK program expands nurse training will be essential for equitable and appropriate referrals across a diverse set of illnesses.

Parents' experiences in choosing a health plan for their children with special health care needs.

To investigate the information sources, and the perceived helpfulness of each source, that parents used when choosing a health plan for their children with special health care needs (CSHCN) and to determine how parents’ perceptions varied by their sociodemographic characteristics and their children’s enrollment status (newly versus previously enrolled). In Florida, a cross sectional study was carried out using 2007 telephone survey data from 500 parents. Sixty-three percent of parents used at least one information source to choose a health plan for their CSHCN. More parents used the Help Line, yet more parents found it to be the least helpful resource. Multivariate analyses suggest that Hispanic parents were 79% more likely and parents of prior enrollees were 1.2 times less likely to use one of the four information sources versus their referent groups. African American parents were 85% more likely and parents residing in Broward County were 55% less likely to indicate that the process was easy versus their referent groups. Hispanic parents were 77% more likely, African American parents were 67% more likely and college graduates were 59% less likely to report that the information they received was adequate versus their referent groups. The results did not highlight one source of information as more useful and helpful. Race and ethnicity seemed to have the most systematic effect on the parents’ experiences in choosing a health plan for their CSHCN, highlighting the need for further research to ensure that information is appropriate across subgroups.